Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, December 29, 2011

Why is ME/CFS research so far behind the times?

Why is ME/CFS research and awareness so far behind the times?  The most oft cited answers to this question are (1) it is not life threatening and thus, not scary enough to grab attention, and (2) the name "chronic fatigue syndrome" downplays the seriousness of it.  Both are true, but there's more to it.  It's also a problem rooted in a muddled population of test subject.  

For more than 50 years, ME/CFS has been a "wastebasket diagnosis"--a category that doctors could dump any hard-to-diagnose patients into.  Health insurers offer doctors strong incentives to diagnose patients as cheaply as possible.  They place caps on the amount of blood tests a doctor can order at one time.  When doctors (and patients) get frustrated after a few rounds of negative blood tests, there's a temptation to give up and "just call it CFS," especially if the symptoms involved fatigue of any kind.

There are dozens of diseases that count fatigue as a symptom, and only one of them is true ME/CFS.  A short list of these other diseases would include Lyme disease, hypothyroidism, various auto immune diseases, Addison's disease, narcolepsy, and various psychological conditions.  There are many, many others.  Some believe that even "true ME/CFS" is really 2 or 3 separate conditions that are still being lumped into the same category.  

Some falsely diagnosed patients eventually go on to discover the true nature of their illness later in life.  Others, undoubtedly continue believing that they have ME/CFS for the rest of their lives.

Now, imagine the chaos that all these false diagnoses must have on any attempt to research ME/CFS.  A research laboratory hires 100 "CFS patients" to conduct a study on a new treatment.  The lab finds, after a year of experimental drug treatment, that their drug is effective for 65% of patients, but has no effect on the other 35%.  Unbeknownst to the lab, it is because 35% of the participants don't really have ME/CFS.  They think they do, but they don't...

A 65% success rate isn't going to grab any headlines in Science Magazine.  It's not likely to snag much research funding, and it certainly isn't going to gain FDA approval for the treatment.  Research money follows successful trials.  Scientists follow research money.  And true progress follows from devoted scientists.   

I don't know if this situation will improve over time.  Certainly, the forums are alive with ME/CFS patients who are attempting to "right" these wrongs on political, financial, scientific and legal fronts simultaneously.  But in the mean time, we are left to our own devices.  There are only a handful of institutes in the world devoted to studying ME/CFS, and they are mostly privately funded by ME/CFS sufferers.  

If one is determined to treat his/her ME/CFS with prescription drugs, the only choice may be to experiment with drugs that have only been approved to treat other conditions.  There are many examples, but they include Valcyte (approved for CMV virus), Ampligen (an immune booster), Immunovir (another immune booster), Rituximab (a cancer drug), and GcMAF (another cancer drug).  The point is, ME/CFS research is so far behind the times due to, in my opinion, all of the false diagnoses tainting the research data, that people with true ME/CFS are left to experiment on their own, without the benefit of (much) reliable research data.  

[Note: I would normally annotate my posts that summarize research, but this post is the product of several months worth of on-and-off research from too many sources to remember.  I will try to revisit this post and update it with annotations at a later time.] 

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